Accessible Transcript: The Fight for Civil Rights for People with Disabilities

Welcome to “The Fight for Civil Rights for People with Disabilities.”

The Americans with Disabilities Act was signed into law 25 years ago. This historic milestone wasn’t the work of one person or even a small group of people. And, it didn’t happen overnight. Thousands of courageous people with disabilities, activists and advocates for disability rights, legislators and the legal community worked tirelessly on many fronts for more than 50 years.

This presentation is based on a collection of 31 stories that capture key “Moments in Disability History.” They can be found on the Minnesota Governor’s Council on Developmental Disabilities’ website. These stories represent just a fraction of the fascinating historic events that eventually led to the passage of the ADA.

Welcome to CLE Training

In this webinar, you will learn about some of the key events that led to the passage of the ADA and the contributions of four important social movements. They are the Parent Movement, the Independent Living Movement, the Self-Advocacy Movement and, finally, the Disability Rights Movement.

You also will learn about the personal experiences of people with disabilities and how their powerful stories of discrimination, inequality and segregation helped frame the debate for passing the ADA.

Finally, you will be introduced to some of the key activists, judicial representatives, Congressional representatives and others who played pivotal roles in passing the ADA.

How to Navigate this Course: Part 1

Before we get started, let’s go over how to navigate this webinar.

There is a navigation bar at the bottom of the screen.

If for any reason you need to pause the training, click the Pause button. To continue to play the training simply click the Play button.

The Speaker button allows you to turn the audio on or off.

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• An outline of the topics

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• A script of the narration

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Click on any of these tabs to view this information.

How to Navigate this Course: Part 2

Throughout the webinar, an arrow button may appear on the screen which allows you to play additional videos and audio clips contained on external websites. When clicking the arrow button, a new browser window will open. To continue, click the play button to play the video or audio clip. When you’re done, close the browser window and click the Play button within the webinar to continue.

People First Language

Now, let’s get started. It’s important to understand the power of language. Historically, society has defined people with disabilities in terms of their limitations and deficiencies, often using words and labels that are considered offensive, derogatory and insensitive today. At times, this presentation refers to historical documents that reflect the cultural norms and language of the times.

Hopefully, you will find this language uncomfortable and recognize how these labels reinforce negative stereotypes and continue to stigmatize people with disabilities. In the interest of accuracy, these references have not been revised to reflect the more respectful “people first” language preferred today.

“People first” language emphasizes the individual, not a disability. As members of the legal community, the words you use can help to create a more inclusive, respectful society.

Click the arrow button on the screen to view this clear explanation made by an individual with an intellectual disability at the first national self-advocacy conference in 1974. http://mn.gov/mnddc/parallels/seven/7b/7b_html/7b_5vid.html

The Parent Movement: Part 1

The ADA can trace its roots to the late 1940s and early 1950s when parents began to organize and demand services for their children with disabilities.

To understand the significance of a national parent movement, it’s important to recognize that, at the time, most people pitied or feared individuals with developmental disabilities. Parents were ashamed and often overtly blamed for their children’s disabilities. The vast majority of people with developmental disabilities lived out of sight in dangerously overcrowded, understaffed public institutions. Medical professionals routinely told parents to place children with developmental disabilities in institutions and Page 2 of 23 to forget about them. Parents who chose to keep their children with disabilities at home were instructed to place the child face down in a stroller when out in public so that no one would see him or her.

The Parent Movement: Part 2

In 1950, ninety parents from across the United States traveled to Minneapolis to participate in the first national conference for parents of children with intellectual disabilities. The Arc, the United States’ first national parents’ organization, was created at the conference. 65 years later, the Arc continues to be a leading advocate for the rights of people with disabilities.

At the 1950 conference, parents agreed to focus on working to pass legislation that would help children with disabilities receive training, encourage research in the field and educate the public that children with disabilities can be trained to be productive citizens. As one parent said in a local newspaper account, “We hope someday that our sons and daughters will not be tax burdens.”

Gov. Youngdahl’s List of Rights

Minnesota Governor Luther Youngdahl was the keynote speaker at the conference in 1950. During his remarks he became one of the first public officials to speak openly about the rights of people with disabilities.

Click the arrow button on the screen to hear Youngdahl’s comments on the rights of children with disabilities. http://mn.gov/mnddc/parallels/five/5a/4.html

Brown v. Board of Education – 1954

There are many parallels between the civil rights movement of the 1950s and 1960s and the disability rights movement that would soon follow.

For example, the 1954 Brown versus Board of Education decision concluded racial segregation in schools is “inherently unequal” and is consequently unconstitutional. This decision, that guaranteed the right to an equal education for children of all races, would later become the model for the PARC versus the Commonwealth of Pennsylvania lawsuit that would guarantee the educational rights of children with developmental disabilities in 1971.

Public demand for change, along with these and other lawsuits would eventually lead to Congressional action.

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Ed Roberts – 1960s: Part 1

By the 1960s, the Parent Movement was well-established. Many of the children who were the focus of the Parent Movement were now young adults demanding the opportunity to be independent and the support services that would make that happen. This helped to set the stage for the birth of the Independent Living Movement.

Ed Roberts is the nationally recognized leader and founder of the Independent Living movement. After contracting polio at age 14, he was paralyzed from the neck down. Despite roadblocks thrown in his way by the educational system, Ed was able to graduate from high school. After fighting and ultimately winning the right to attend the University of California Berkeley, one headline read: “Helpless Cripple Attends U C Berkeley in Wheelchair.”

He entered the University of California Berkeley in 1962, the same year that James Meredith entered the University of Mississippi.

Ed Roberts – 1960s: Part 2

It is impossible to measure the profound impact that Ed had on disability rights.

His accomplishments include starting the Physically Disabled Students Program at Berkeley and creating the Berkeley Center for Independent Living.

He created the first curb cut, making the city of Berkeley accessible to people of all ages and abilities.

He received a MacArthur Fellowship.

At one point, the California Department of Rehabilitation judged Ed incapable of being employed. He went on to head that same agency for eight years.

He traveled the world and he changed it.

Click the arrow button on the screen to hear Ed Roberts discuss the importance of inclusion. http://mn.gov/mnddc/parallels/six/6b/6b_html/6b_13vid.html

Newspaper Exposés – 1960s: Part 1

Throughout history, the media has played an important role in furthering disability rights.

After World War II, several newspapers ran articles exposing the horrific conditions in the nation’s institutions.

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Funding to institutions had been reduced, leading to dangerous understaffing. In some institutions, 1 staff member supervised 100 residents. Residents were chained to benches and one toilet was shared by hundreds of people.

Unfortunately, these conditions steadily deteriorated. By 1960, approximately 200,000 with developmental disabilities lived in public institutions in the United States. Yet, their care was grossly underfunded. In 1964, the per diem rate for a person living in an institution was $5.57, about one-half of the daily amount allotted to tend animals in a zoo.

Newspaper Exposés – 1960s: Part 2

Another round of media exposés in the 1960s and 1970s prompted demand for significant changes to the system.

These images show the dehumanization that occurred in the nation’s institutions.

When experts from Sweden and Norway traveled to America in the 1960s to investigate conditions in U.S. institutions, local headlines declared that Scandinavians treated their cattle better than we treated people with disabilities.

Newspaper Exposés – 1960s: Part 3

One newspaper article used three photos to illustrate the sterile conditions in an institution. Whether the resident is a child, a teenager or an adult, their physical surroundings don’t change to reflect the group’s age or interests. All are sterile, cold and uninviting.

Newspaper Exposés – 1960s: Part 4

In 1966, Burton Blatt published Christmas in Purgatory, one of the most famous and influential exposés.

Using a hidden camera, Blatt and Fred Kaplan captured life inside the public institutions. The resulting exposé was published in Look magazine. Readers were horrified. In the essay, Dr. Blatt declared “there is a hell on earth, and in America there is a special inferno – the institution.”

Medicaid and Medicare

At about the same time in 1965, President Johnson signed both Medicaid and Medicare into law.

While Medicaid began as a low income health care program, it is now the primary and largest financial source of funding for long-term services and supports for people with disabilities.

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Jacobus tenBroek – 1966

Professor Jacobus tenBroek, a University of California Berkeley Law School professor, was another influential leader in the disability field. He had founded the National Federation of the Blind in 1940.

In 1966, tenBroek authored an article in the California Law Review, entitled “The Right to Live in the World: The Disabled in the Law of Torts.” In the article, ten Broek argued that physical access to public buildings and transit is a civil right. He wrote:

“The right of access to public accommodations and common carriers is a civil right. It is a basic right indispensable to participation in the community, a substantive right to which all are fully and equally entitled.”

Self-Advocacy Begins in Sweden

During the 1960s, the concept of self-advocacy was beginning to crystallize.

In 1969, Bengt Nirje, a director of the Swedish parent association, founded a club specifically for people with intellectual or developmental disabilities in Sweden. Unlike other programs created by professionals for people with disabilities, this club was run by its members. Nirje believed that people with developmental disabilities should have opportunities to make their own decisions. This represented a dramatic shift in the way people were treated.

Dignity of Risk – 1969

At about the same time, Robert Perske published a book called “The Dignity of Risk.”

In his book, Perske moves the self-advocacy movement a step further by positing the concept of the “dignity of risk,” the belief that everyone, regardless of ability, should have the right and the opportunity to take risks and, perhaps, fail.

Wolf Wolfensberger – 1972

Professor Wolf Wolfensberger brought the principles of normalization to the United States from Denmark and Sweden.

After studying the principles of “normalization” with Nirje, Wolfensberger returned to the United States and became the foremost proponent of normalization in North America.

The Theory of Normalization is based on the belief that everyone, including people with intellectual or developmental disabilities, has the right to a life that has the same patterns and conditions of everyday life. This means having opportunities to socialize in age appropriate ways, participate in age appropriate community events and activities, learn, live independently and work.

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Over the years, Wolfensberger wrote extensively and constantly challenged social service professionals to view people with disabilities not as objects of pity or subhuman but as people with valued social roles.

The self-advocacy movement was underway.

Federal Lawsuits About Institutions: Part 1

While the self-advocacy movement was gaining strength, conditions in institutions were deteriorating, prompting a series of federal class action lawsuits in Pennsylvania, New York, Alabama and Minnesota.

One lawsuit, Wyatt v. Stickney, was filed in October 1970. It would eventually wind its way through the federal court system for over 30 years until it was finally closed December 2003.

In 1972, Judge Frank Johnson issued the “Wyatt Standards,” 35 minimum standards for the adequate treatment of people with mental illness and developmental disabilities. He also included 14 statements about human rights and appointed a “human rights committee” to oversee implementation of the standards.

Federal Lawsuits About Institutions: Part 2

Perhaps the most well-known case in the United States involved the Willowbrook State School on Staten Island. Senator Robert Kennedy described Willowbrook as a “snake pit” following a tour of the facility in 1965. At the time, Willowbrook housed more than 6,000 people with developmental disabilities in a facility designed for 4,000.

However, it wasn’t until a one hour exposé produced by ABC and Geraldo Rivera aired in 1972 that the deplorable conditions really came to light.

As a result of this exposé, parents of Willowbrook residents filed a class action suit in federal court on March 17, 1972. The case set important precedents for the humane and ethical treatment of people with developmental disabilities who live in institutions. It also helped to accelerate community placements for people with developmental disabilities and expanded community services.

Rivera’s documentary and accompanying photo exhibits from the Willowbrook case are available online. They provide a riveting portrait of neglect and abuse in the institution.

Federal Lawsuits About Institutions: Part 3

On August 30, 1972, Richard Welsch filed a complaint with federal courts criticizing the physical conditions, care, treatment and training that residents, including his daughter Patty, received at a state-run regional treatment center in Cambridge, Minnesota. Welsch alleged that conditions at the facility and the treatment provided there did not meet constitutional standards of due process.

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On February 15, 1974, Judge Earl Larson issued a 23-page opinion favoring Welsch. The judge wrote, "The evidence is overwhelming and convincing that a program of habilitation can work to improve the lives of Cambridge residents. Everyone, no matter the degree or severity of mental retardation, is capable of growth and development if given adequate and suitable treatment."

As a result of Judge Larson’s ruling, resident populations were reduced, staffing ratios increased and programming improved. The case lasted until 1989.

Click the arrow button on the screen to hear Eleanor Welsch, wife of Richard Welsch, describe their experience. http://mn.gov/web/prod/static/mnddc/live/past/videoclips/Eleanor-Welsch.html

Section 504 – Rehab Act 1973

In the 1970s, parents and other disability rights activists continued to pressure elected officials for equal rights legislation at the state and federal levels.

In 1972, Senator Hubert Humphrey proposed an amendment to the Civil Rights Act of 1964 that would add people with disabilities as a protected class. While this effort was unsuccessful, he worked with Congressional staff to incorporate a single sentence on antidiscrimination protections into the Vocational Rehabilitation Act of 1973. This sentence reads:

“No otherwise qualified individual with handicaps in the United States . . . shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance....”

Usually referred to simply as “Section 504,” this single sentence provides the first civil rights protection against discrimination based on disability.

Because the provision was added late in the process, there were no hearings and no Congressional record.

Section 504 Sit-ins

The US Department of Health, Education and Welfare failed to issue regulations for Section 504. After a four year delay, activists held demonstrations to bring attention to the issue.

In Washington D.C., 300 protesters occupied Secretary Califano’s office.

The protests weren’t confined to Washington. Similar protests took place in 10 cities, including San Francisco where more than 150 people occupied HEW offices for 28 days. This protest became the longest occupation of a federal building in US history.

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The regulations were eventually promulgated.

At the time, Ed Roberts was director of Rehabilitation Services for the State of California. In this video clip, he describes the importance of the struggle. Click the arrow button on the screen to learn about Roberts’ experience.

http://mn.gov/mnddc/ed-roberts/wontgoaway2.html

Self-Advocacy in the U.S.

Sweden led the way, holding the first national self-advocacy conference in 1968, followed by national conferences in England in 1972 and Canada in 1973.

A group of self-advocates from Oregon attended the Canadian conference. Energized by the experience, they decided to hold a similar conference in the United States in 1974. At an early planning meeting, a self-advocate stood up and said, “I am a person first!”

People First was later chosen as the name for the nation’s first self-advocacy organization. This passionate plea also eventually led to the more inclusive, respectful language that we use today.

Ethical Issues—1970s

Because society viewed people with developmental disabilities as less worthwhile or valuable, life saving medical treatment was often withheld.

Prior to the ADA, parents and doctors in hospitals around the country decided against providing life-saving treatment, sometimes denying even routine medical care, for infants with certain physical or suspected intellectual disabilities. Consequently, thousands of newborns who might otherwise have lived with disabilities were allowed to die.

Oklahoma Children's Memorial Hospital actually created and applied a formula to determine the potential quality of life for a child born with spina bifida. This formula was used from 1977 to 1982 to determine the level of treatment the infant should receive. At least half of the babies born with spina bifida were not treated at the hospital during this time.

Several important court cases, including two highly-publicized “Baby Doe” cases in 1982 and 1983, eventually led to formal, legal affirmation that people with disabilities have the “right to life” and appropriate medical treatment.

Education Lawsuits and Federal Law – 1970s

Another prominent figure in the fight for disability rights was Dr. Gunnar Dybwad, Executive Director of the National Association for Retarded Children. He suggested that

Page 9 of 23 the Supreme Court’s 1954 ruling that “separate facilities are inherently unequal” had enormous possibilities for children with disabilities.

In 1971, Thomas Gilhool filed the Pennsylvania Association for Retarded Citizens versus Commonwealth of Pennsylvania lawsuit in federal district court. Gilhool used the 1954 Brown versus Board of Education ruling to argue that children with disabilities had the right to due process and an education at the public expense.

Following announcement of the Consent Decree, The New York Times ran a story on page one that quoted Dr. Dybwad as saying, “The decision makes Pennsylvania the first state in the union to guarantee education and training to all of its children with developmental disabilities now and in the future.” Four days later, The New York Times ran an editorial calling on Congress to guarantee the same rights for children with disabilities across the United States.

Public Law 94-142 was passed in 1975. This would later be called the Education for All Handicapped Children Act of 1975. At that time the law was passed, more than one million children with disabilities were not in school.

The Beginning of the ADA

In the 1980s, the Disability Rights Movement gathered momentum.

This movement is based on the premise that people with disabilities deserve the same civil rights protections that United States’ citizens without disabilities have.

In the 1980s, disability activists began to push for a single law that would ensure equal access to educational and employment opportunities, access to public facilities and government services, and public transportation. This single law would become known as the Americans with Disabilities Act.

Toward Independence

In 1986, the National Council on Disability released a study called Toward Independence. The study highlighted discriminatory programs, practices, and policies that promoted dependence on charity and government programs. The NCD concluded that public policy discriminated against people with disabilities.

The NCD joined other organizations in urging Congress to enact a comprehensive law with broad coverage that required equal opportunity for individuals with disabilities and set clear, consistent, enforceable standards that prohibited discrimination on the basis of disability.

At the same time, Congress was studying the status of individuals with disabilities and found that discrimination persisted in all aspects of American society.

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A New Way of Thinking

In 1987, the Minnesota Governor’s Council on Developmental Disabilities produced a book called A New Way of Thinking that described a new way of looking at public policy and people with disabilities. This new approach proposed that people with disabilities could learn in regular schools, live in real homes, work in real jobs and enjoy life in the community.

More than 100,000 copies of the publication were distributed nationally and internationally.

Senator Lowell Weicker, Jr.

By the 1980s, support for full civil rights for people with disabilities had reached Congress.

Lowell Weicker, Jr., a U.S. Senator from Connecticut, is widely regarded as the Congressional "father" of the ADA. He also was the parent of a child with a disability. During his years in Congress, Senator Weicker held hearings about issues important to people with disabilities, and introduced and co-sponsored numerous pieces of legislation that laid the foundation for the ADA.

For example, in the 1980s, the Senator and his staff led an investigation into conditions at state institutions that resulted in extensive audits by the federal government.

In April 1988, Senator Weicker introduced Senate 2345, known today as the ADA.

Congressman Tony Coelho

U.S. Representative Anthony Coelho of California introduced H.R. 4498, the House version of the ADA.

In September 1988, Representative Coelho testified during hearings on the proposed ADA, along with Senator Weicker, several other members of Congress, Senators, Representatives and advocates.

Representative Coelho’s testimony was particularly moving because he had the courage to share his personal experiences as a person with disabilities. Click the arrow button on the screen to watch his testimony.

http://mn.gov/mnddc/parallels/five/5d/5d_html/5d_11vid.html

Election – 1988

Both Senator Weicker and Congressman Coelho left Congress before the landmark ADA was signed into law in 1990.

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Congressman Major Owens

When the original version of the ADA was introduced on April 29, 1988, most Americans were unaware that people with disabilities didn’t share the civil rights that they took for granted.

In May 1988, Congressman Major Owens from New York established the Task Force on the Rights and Empowerment of Americans with Disabilities. The task force was charged with gathering information on the extent and nature of discrimination against people with disabilities.

The task force was comprised of 38 citizen volunteers and received no public funding.

Congressional Task Force

The Task Force was chaired by noted disability rights advocate Justin Dart, Jr. Dart’s wife, Yoshiko, served as staff.

Dart was a leader of the international Disability Rights Movement and a renowned human rights activist. His father was Justin Dart, a successful businessman and confidant of President Reagan. He became widely recognized as the Citizen “father” of the Americans with Disabilities Act.

Despite his public prominence, Dart was always quick to recognize the “tens of thousands of people who fought for the first civil rights law in the history of the world for people with disabilities.”

Elizabeth Boggs Co-Chaired the Task Force

Elizabeth M. Boggs, Ph.D., co-chaired the Task Force. Dr. Boggs was a pioneer of the American disability rights movement. She was the parent of a child with developmental disabilities who lived in an institution and was founder and Past President of the National Association for Retarded Children. She was appointed to President Kennedy's Panel on Mental Retardation and was vice-chair of its Task Force on the Law from 1961 to 1963.

Other members of the Task Force represented every disability group and a broad spectrum of disability-related associations in Washington D.C.

Tour of 50 States

The road to the ADA’s passage was paved with thousands of stories submitted by people with disabilities, parents, family members, advocates and service providers who had first-hand experiences with discrimination and segregation.

They had powerful stories to tell and Justin Dart provided the forum.

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Between 1988 and 1989, Justin and Yoshiko Dart held 62 public forums across the country. These forums were held in every state, as well as Washington, D.C., and Guam. In all, 5,000 personal stories were documented, collected in boxes and brought to Washington.

While Dart’s intent was to create a network of national support for passage of the ADA, the forums also provided an opportunity for people with disabilities and other advocates to publicly express their frustration and outrage at discriminatory practices.

Stories of Discrimination: Part 1

These stories offered disturbing insights into the discrimination and segregation that people with disabilities regularly encountered. Here are their stories:

Lisa Carl’s attempt to see a movie in Tacoma, Washington is one of the most well- known stories.

Lisa Carl was a young woman with cerebral palsy who used a wheelchair. On May 28, 1988, she wanted to see a film at an accessible theater in Tacoma. The theater manager refused to accept her $1.00 admission and wouldn’t allow her to enter the theater. When contacted later by an advocate on Lisa's behalf, the theater owner said, “I don’t want her in here and I don't have to let her in.”

Lisa Carl later told Congress, “I was not crying on the outside but I was crying on the inside. I just wanted to watch the movie like everyone else.”

Stories of Discrimination: Part 2

Each story in the collection offered a powerful statement on injustice. In Alabama, a man who was deaf described being denied a modeling job because of his disability.

Parents described the “Diaper Rebellion” in Alaska, when parents revolted after Medicaid stopped covering the cost of diapers for families caring for children with severe and multiple disabilities in their homes.

Stories of Discrimination: Part 3

In Massachusetts, a woman who used a wheelchair described how it felt to be excluded from a legal hearing because she couldn’t access the second story courtroom.

And parents of children with Down Syndrome described confronting a Vice President who had described critics of an arms control agreement with the Soviet Union as “members of the extra chromosome set.” The Vice President eventually publicly apologized.

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Stories of Discrimination: Part 4

In Missouri, a man who used a wheelchair described spending 95 days in jail without access to his wheelchair because it couldn’t fit through the doorway of the cell.

In Mississippi, a state employee told about being charged an extra $10 because he had requested an accessible room.

Stories of Discrimination: Part 5

Congress heard the story of a university professor in Nebraska who was denied a place on a speakers’ bureau because he stuttered and about an Illinois school system that disciplined students with developmental disabilities or mental health issues by locking them inside wooden boxes for up to 30 minutes.

Stories of Discrimination: Part 6

Congress heard about a blind voter with cerebral palsy who was not allowed to register to vote in state elections.

And they heard about the terrifying, sometimes deadly consequences of inaccessible facilities, such as the death of a University of Virginia student. The student, who used a wheelchair, plunged 50 feet to his death because the campus was inaccessible and had no barrier free routes.

And they heard about the experiences of the President of the Gallaudet Student Government who was denied medical treatment because hospitals refused to hire interpreters.

The “Hidden Army”

California Representative Tony Coelho argued that a "hidden army" played a significant role in the ADA’s passage. This army included Representative Coelho, Representative Hoyer, Senator Kennedy, Senator Dole, Senator Hatch and other members of Congress and their staffs who understood the stigma of being disabled, whether through personal experience or by witnessing the experiences of a family member or friend with a disability.

This hidden army helped to raise awareness and support for civil rights for people with disabilities by sharing their own experiences and the stories of their family members.

The “Passionate Insiders”

A group of well-known disability rights advocates also played an important role. These passionate insiders included Rud Turnbull, a University of Kansas professor and Co- founder and Co-director of the Beach Center on Disability. Turnbull's career included

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research in the late 1980s as a Kennedy Foundation Public Policy Fellow. The results of this research were later incorporated into the ADA.

Ralph Neas was another insider. Neas was Executive Director of the Leadership Conference on Civil Rights. He developed Guillain-Barré Syndrome, which left him unable to breathe without a respirator. His testimony helped convince civil rights leaders to put disability rights at the top of their agenda.

One of most influential insiders was disability rights activist, Evan Kemp, Jr., whose parents founded the Muscular Dystrophy Association.

Evan Kemp, Jr.

As director of the Disability Rights Center, Kemp used his exceptional resumé and personal experiences with discrimination to influence the Reagan and Bush Administrations.

At age 12, Kemp contracted a rare muscle weakening disease related to polio that resulted in long-term mobility challenges. Kemp went on to graduate in the top 10 percent of his class at the University of Virginia Law School. Despite his academic standing, he was turned down for jobs at 39 law firms because of his disability. Eventually, Kemp’s uncle helped him to get a job at the Internal Revenue Service and he later moved on to the Securities and Exchange Commission where he had a successful career for seven years. In 1971, the SEC removed Kemp from the management track when Kemp was injured in a garage door accident that required him to use a wheelchair.

Kemp eventually sued the SEC for discrimination and won. Incensed at the way people with disabilities were treated, he left government in 1980 to head the Disability Rights Center.

Vice President George H.W. Bush

Perhaps the most important member of the "hidden army” was President George H. W. Bush.

When the Reagan-Bush administration was sworn into office in 1981, Reagan assigned then-Vice President Bush to lead the President’s Task Force for Regulatory Relief. Section 504 of the Rehabilitation Act and the Education of All Handicapped Children Act were among the areas to be scrutinized.

People with disabilities and parents of children with disabilities responded to the attack quickly and in force. Letters and phone calls poured in, sending a strong, consistent message — do not repeal Section 504 or the Education Act. Bush understood he was dealing with a hidden grassroots constituency that had enormous impact. Bush, along with his legal counsel, C. Boyden Gray, met with disability groups to negotiate the administration's plan.

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Vice President Bush soon found himself face-to-face with Evan Kemp, Jr. who told him that people with disabilities wanted independence and jobs. Gray later said the real "eye opener" came when Kemp said that people with disabilities were looking for self- empowerment and not “some captured bureaucracy in Washington, D.C.”

“The Retarding Environment”

When the administration held hearings on Section 504 and the Education of All Handicapped Children Act around the country, individuals with disabilities and parents of children with disabilities were very visible. In March 1983, Bush announced that the administration was dropping its objections to Section 504 and rules related to the Education of All Handicapped Children Act.

In 1985, then-Vice President Bush met with two self-advocates from California. Tom Hopkins, a self-advocate and leader of Capitol People First of Sacramento, and fellow self-advocate Sandra Jensen, met with Vice President Bush to discuss their concerns and disappointments with sheltered workshops, day “wasting” centers and institutions. Kemp was present at the meeting and later recalled that "(Bush) never had his preconceptions about any group turned upside down so quickly."

Sandra Jensen would later call upon President Bush in 1995 for assistance when she was denied a heart-lung transplant because she was born with Down Syndrome. Jensen and other advocates fought the hospital’s decision, arguing that it violated the ADA and discriminated against her because she had a disability. Jensen eventually received the transplant but passed away 16 months later from complications.

Kemp and Bush Become Allies

Kemp and Bush quickly became mutual admirers and potent allies. Kemp is widely credited with convincing the President to make disability civil rights a priority of his administration. As Bush began paying attention to disability issues, he sought Kemp's input while drafting speeches before disability groups. On Bush's recommendation, President Reagan appointed Kemp Commissioner of the Equal Employment Opportunity Commission in 1987.

In May 1988, the same month that the ADA was introduced in the Senate, Kemp and other disability activists gathered to develop a strategy for promoting disability rights during the upcoming elections. Each participant was assigned to obtain a statement of rights for people with disabilities. Kemp took the Bush campaign.

During his acceptance speech at the National Republican Convention three months later, Bush publicly pledged, “I am going to do whatever it takes to make sure the disabled are included in the mainstream.”

This was the first time that an American presidential nominee had acknowledged people with disabilities as a political force.

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In 1989, now-President George H.W. Bush named Kemp the Chair of the EEOC.

Senator Harkin

On September 7, 1989, fifteen months after it was first introduced, the U.S. Senate voted 76 to 8 in favor of Senate 933, which would later be called the Americans with Disabilities Act. The vote took place after a lengthy Senate floor debate.

Senator Tom Harkin of Iowa was one of those who spoke in favor of the bill. He said:

"So, Mr. President, on behalf of my brother who is deaf, my nephew who is quadriplegic, and the 43 million Americans with disabilities, today we introduce this historic legislation—the Americans With Disabilities Act. Let's celebrate the 25th anniversary of the enactment of the Civil Rights Act of 1964 by passing the ADA this year and finally recognize the civil rights of Americans with disabilities."

Senator Kennedy

Senator Ted Kennedy of Massachusetts and long-time advocate for civil rights, said:

"This really is the Emancipation Proclamation for the disabled in the country...a proud day in the history of Civil Rights.”

Senator D’Amato

Senator Al D’Amato from New York went on record saying:

"Few are able to truly understand the struggle faced daily by millions of Americans with disabilities. The barriers the disabled must overcome in order to meet basic needs are many. Activities accomplished with ease by most—communicating, commuting, or entering the workplace—are often significant hurdles for those with disabilities. This legislation, Mr. President, will break down these barriers once and for all.”

Amendments That Did Not Pass

Proponents of the bill had to fend off many amendments which would have severely limited the scope of its coverage. Some of the amendments that did not pass include denying ADA protections to people with specific disorders such as compulsive gambling, kleptomania and pyromania.

Protections for people with sexual behavior disorders, drug or alcohol users, and people with organic brain disorders due to drug abuse were also hotly debated.

An amendment was proposed but did not pass that would exclude members of the legislative branch of the United States government.

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Other proposed amendments that did not pass would have given private bus companies a one-year extension to comply with ADA regulations and required a study of wilderness accessibility issues.

Senator Helms v. Senator Harkin

A particularly vigorous exchange took place between Senators Harkin and Helms on whether or not Senate 933 should include or exclude pedophiles, schizophrenics, kleptomania, manic depressives, psychotic disorders, homosexuals, transvestites and HIV and AIDS.

House Committee

On November 14, 1989, the U.S. House of Representatives Education and Labor Committee voted 35 to 0 in favor of House of Representatives 2273, a modified version of the ADA.

The Negotiators

Representative Tony Coelho of California was the ADA's original House sponsor. Before leaving Congress, Coelho asked his closest friend, Maryland Representative Steny Hoyer to oversee the fight for the ADA in the House. The modifications were negotiated by Representative Hoyer and Representative Steve Bartlett of Texas, the ranking minority member of the Select Education Subcommittee.

The modifications were primarily aimed at clarifying parts of the bill passed by the Senate in September. The disability community agreed to the modifications because they did not weaken the Senate bill. However, the Committee defeated eight amendments aimed at weakening the ADA.

One controversial amendment that was approved by the House was introduced by Representative Jim Chapman, also from Texas. This amendment gave restaurant owners the authority to shift people with AIDS or HIV infections out of food handling positions. The amendment was requested by the National Restaurant Association.

House of Representatives 2273 then moved to the House Judiciary; Energy and Commerce; and Public Works and Transportation Committees for review. Each had jurisdiction over some aspect of the bill.

Full Page Ad in Washington Post

By early 1990, the ADA still hadn’t received Congressional approval, even though it had passed the Senate and had bipartisan support.

Justin Dart and his wife, Yoshiko, came up with a creative way to push Congress to act. They gathered more than 8500 signatures on a petition. On February 7, they placed a full page “Message to Congress from Representatives of 43 Million Americans with

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Disabilities” in the Washington Post. The ad was paid for with hundreds of contributions ranging from $2 to $25.

Impressed by this “Magna Carta” on disability rights, both Senator Harkin and President Bush contacted the Darts.

A week later, on February 14, 1990, Justin Dart met with President Bush in the White House and presented him with a copy of the full page ad.

Capitol Crawl

On March 12, 1990, with the ADA still stalled in a House Committee, disability rights activists launched the Wheels of Justice campaign.

Nearly 500 individuals, many of them wheelchair users, gathered on the sidewalk in front of the White House, then marched to the Capitol where disability rights advocates, including Justin Dart, Evan Kemp and Mike Auberger, a national organizer for ADAPT, were speaking. Auberger told the crowd “we will not permit these steps to continue to be a barrier to prevent us from the equality that is rightfully ours.”

Sixty protesters, including a 7 year old girl, responded by casting aside their wheelchairs, crutches and walkers and began to drag themselves up 78 steps to the Capitol entrance. The next day, more than 200 protesters for disability rights were arrested for occupying the Capitol Rotunda. More than 150 were arrested. Together, the Wheels of Justice March, Capitol Crawl and Rotunda take-over represent one of the largest disability direct actions to date.

This protest came to be known as the "Capitol Crawl” and drew attention to the very real struggles that people with disabilities faced in their communities.

Michael Winter, former Executive Director of the Berkeley Center for Independent Living, participated in the crawl and was arrested during the next day’s protest. He recalled: “Some people may have thought it was undignified for people in wheelchairs to crawl in that manner, but I felt that it was necessary to show the country what kinds of things people with disabilities have to face on a day-to-day basis. We had to be willing to fight for what we believed in.”

The Final Votes

Their actions spurred Congress to act. Additional Congressional hearings were convened and last minute negotiations occurred.

On June 12, 1990, U.S. Representative Steny Hoyer, who spearheaded the ADA through the House of Representatives, demanded a vote. The final vote was 377 in favor of the ADA and just 28 against.

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The next day, the Senate voted. Senator Tom Harkin who sponsored the ADA in the Senate, said “it may be raining outside but this is truly a day of sunshine for all Americans with disabilities.”

Like its counterparts in the House of Representatives, more than 90 percent of members of the Senate voted in favor of the ADA. The final vote was 91 to 6.

Click here for viewer call-in held by Rep. Steve Bartlett

Click here for portions of the house debate

Click here for testimony from Senator Tom Harkin

Signing Ceremony

The Americans with Disabilities Act of 1990 was officially signed into law on July 26, 1990. Thousands of people attended the signing ceremony held on the White House lawn.

Reverend Wilkie, Evan Kemp, Sandra Parrino and Justin Dart, Jr. joined President Bush on the podium. During his remarks, President Bush praised the collective efforts of disabilities organizations and the 43 million Americans with disabilities, who “made this happen.” He went on to describe the ADA as the world’s first declaration of equality for people with disabilities and noted that Lisa Carl could now attend a movie.

At 10:26 a.m., President Bush proclaimed: "Let the shameful wall of exclusion finally come tumbling down,” then signed the landmark legislation into law.

International Impact: Part 1

Other countries soon adopted similar laws to address the discrimination, barriers, and challenges faced by people with disabilities. Between 1991 and 1999, the ADA inspired disability rights laws in Luxembourg, Italy, Japan, the United Kingdom and Sweden.

In 1992, Brazil passed the first Latin American disability legislation, followed by Chile in 1994 and Costa Rica in 1996. Similar laws followed in Guatemala, Nicaragua, Peru and Venezuela.

International Impact: Part 2

In 2006, the United Nations adopts the Convention on the Rights of Persons with Disabilities, based on the ADA principles of non-discrimination and inclusiveness. When this Disability Treaty opened for signatures in 2007, it was signed by 82 countries and ratified by one. Currently, 151 countries have ratified the convention... but not the United States.

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The UN’s International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities entered into force in 2008. The United States signed the convention’s principles in 2009.

The Olmstead Decision

The Olmstead Decision is one of the most important ADA legal victories for people with disabilities. On June 22, 1999, the case of Olmstead versus L.C. & E.W. was heard by the United States Supreme Court. In a 6-3 decision, the Court ruled that states violate the ADA when they “unnecessarily” institutionalize people with mental disabilities.

Lois Curtis and Elaine Wilson had been confined to a Georgia institution even though state workers said they could be served well in the community. Tommy Olmstead was Commissioner of the Georgia Department of Human Services at the time.

Justice Ruth Bader Ginsburg wrote that “states are required to place persons with mental disabilities in community settings rather than in institutions when the State's treatment professionals have determined that community placement is appropriate; the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and the placement can be reasonably accommodated...”

Following the decision, President Clinton directed all state Medicaid programs to draw up plans to comply with the Olmstead ruling and the “integration mandate” of the ADA. Implementation of Olmstead is an ongoing struggle over rights and resources.

From LRE to Most Integrated Setting

The concept of the least restrictive environment has continued to evolve since it first found its way into court decisions in the late 1960s and early 1970s.

During the 1980s, advances in assistive technology and services, coupled with changing social values, advanced the idea that people with disabilities should and could be included in society. The concept of inclusion was based on the premise that all individuals with disabilities had a right to participate, not just be present, in the community and in activities with their neighborhood peers, siblings, and friends. Least restrictive was not enough; more was required.

Following passage of the ADA and as directed by Congress, the U.S. Attorney General issued regulations for implementing Title II of the ADA. These regulations were based on similar regulations issued under Section 504. Title II regulations require public entities to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” The ADA’s preamble discussion of the “integration regulation” explains that “the most integrated setting” is one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible…”

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The ADA’s language of full integration, referred to as the integration mandate, is reflected in the Olmstead decision.

Judge Frank and Karen Loven

The treatment and rights of people with disabilities have changed dramatically since the early 1950s when parents first came together to press for respect and civil rights for their children with disabilities. Few would have predicted that a self-advocate and a sitting US District Court Judge would co-teach a Continuing Legal Education session about disability justice.

Yet, in 2010, Karen Loven, a self-advocate, and U.S. District Judge Donovan Frank shared their perspectives on progress made towards achieving disability rights in the documentary From Institutions to Independence produced by Twin Cities Public Television.

Click the arrow button on the screen to watch an excerpt from a joint interview with Karen Loven and Judge Frank.

http://mn.gov/mnddc/institutions-to-independence/karenFrank.html

Harkin’s Farewell Speech

The ADA has had a major impact on the lives of millions of Americans with disabilities since it was signed into law 25 years ago. Yet, a great deal of work remains.

When Senator Tom Harkin of Iowa retired from the Senate in December 2014, he used his farewell speech to challenge current and future legislators to continue to push for more opportunities for people with disabilities. As you’ll recall, Harkin introduced the ADA to the Senate in 1988.

In his speech, Harkin proudly noted that “we broke down barriers, opened doors of accessibility and accommodation and said to people with disabilities now go on, follow your dreams, and in the words of the Army motto, be all you can be.”

He also warned that while many barriers have been removed, others persist and pointed out that “we have made significant strides forward in changing America to fulfill two of the four goals of the Americans with Disabilities Act. These two are full participation and equal opportunity. The other two goals — independent living and economic self-sufficiency — need more development.”

Click the arrow button on the screen to watch an excerpt from Harkin’s remarks.

http://mn.gov/mnddc/ada-legacy/harkin-cspan.html

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1950 – Tax Burdens; 2015 – Contributing Citizens

In 1950, before the ADA was considered even remotely possible, the hopes and dreams of parents were much lower. Remember that parent who was quoted as saying “we hope that someday our sons and daughters are not tax burdens?”

65 years later, that simple hope has been realized by millions of Americans with disabilities, including this man with developmental disabilities who had the honor of ringing the bell at the New York Stock Exchange.

As Denise Karuth, a disabilities advocate, told members of Congress during ADA hearings in 1988:

“We are not asking for pity. We are not even asking for your sympathy. All we ask is that you make real the promises and opportunities that America strives to offer everyone: the respect and dignity we deserve as free and responsible citizens.”

This is the legacy of the ADA.

Thank You

Thank you for your time. This presentation was created by the Minnesota Governor’s Council on Developmental Disabilities.

Our website and archives contain hundreds of resources on the history of people with disabilities, the ADA and the Disability Rights Movement. You’ll find free videos, documentaries, essays, media reports, historical documents and online learning opportunities. .

Please check them out at http://mn.gov/mnddc.

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